KP: Please share a little background about Cecilia:
DN: Cecilia was born at 27 weeks by emergency c-section. I had been on bed rest for three weeks due to pre-eclampsia. On the night she was born, I had gone into HELP Syndrome. Since I was in kidney and liver failure, had severe hypertension, and was nearing seizures, Cecilia had to be born. Four days after she was born, she contracted MRSA and went into septic shock. All of her organs went into failure, all of her skin blistered and fell off (scalded skin syndrome) and she was transferred from one hospital NICU to the children's hospital NICU. No one expected her to survive the night, but she did. She came off the vent after ten days. Over her 12 week stay, there were many two steps forward, one step back. The day before her discharge while undergoing her routine discharge tests, the significant brain damage she suffered likely when septic was obvious on her head scan. We were told she may have cerebral palsy or could just have a mild learning disability. It was too early to tell. Within three weeks of coming home, she demonstrated pretty much textbook signs indicating profound cerebral palsy. She failed to thrive and quit eating. At 8 months she had surgery to put in a g-tube and fundoplication to control her excessive vomiting and severe reflux. I was in denial until a doctor gave me the diagnosis when she was ten months old. She had cortical vision impairment and spastic quadriplegia cerebral palsy. She has had thousands of hours of therapy: vision, speech, assistive technology, physical, and occupational. She has had many surgeries to correct amblyopia, release tendons and muscles, correct bone malformations (due to tight muscles) and joint sublexations, input a baclofen pump, and remove hardware. The number of procedures, tests, and labs are too many to count. Her hospital admissions have been many. Complications from all of these are common for Cecilia. She stroked after one surgery, blinding her in one eye and taking her speech away for a few years. If I had a dollar for all the times I heard that she was a medical mystery, we would be rich. Now she has autonomic dystonia. She has knocked on death's doors more than a handful of times, but seems to be the little engine that could...just keep on going. Despite all of this, she is one of the sweetest, happiest people I know. She understands everything around her, has a pretty dry sense of humor, and is trapped in a crappy body. Her laugh tickles you and her smile warms you.
What was one of the hardest challenges that should have been a lot easier?
Getting her doctors to talk to each other.
If you could go back in time to when you found out about Cecilia's diagnosis and give yourself one piece of advice, what would it be?
Use the internet only after you have a
diagnosis, not while the specialist are running tests on all the possibilities.
No need to stress yourself out on stuff your kid doesn't have.
What inspired you to enter a triathlon with Cecilia?
Reading Rick and Dick Hoyt's book 8 years ago.
Describe your first triathlon:
Our first was in 2013. I am
very competitive when racing, but this race wasn't about beating other
athletes. It was about beating all the odds...that she was still alive after so
many near death experiences, and despite a crappy body could break out of being
the "poor little handicapped girl" and flip cerebral palsy off. No
excuses and life without limits are our mottos.
Do you have any future race plans?
We are running in Marine Corps Marathon this year. It will be her first 26.2.
Wild dreams for Cecilia?
My wild dream is that some
day strangers will say to her, "How are you? What is your name?"
Instead of asking me or whomever is assisting her what is wrong with her and
why she can't walk.
What is the highlight of an average day in the life of Cecilia?
Laughing with her little sister, Lucy.
One message you would like to share to the "normal" world about life in the disabled world:
We aren't special...anyone
touched by disability. No one was specially chosen, and none of us deserve an
award for living with it daily. None of us asked for this nor wanted it. It can
be incredibly hard, but life is hard. As parents, don't say you could never do
this. Really? I think we all would lay down our lives for our flesh and blood.
We all love our kids unconditionally. You will do whatever you have to
regardless of the challenge for your kids.
Can you describe a situation where someone was
rude/disrespectful towards Cecilia and/or you because of her disability? How
did you handle it? Would you handle it differently if it happened today?
There have been tons and in
her younger (and my less experienced years) I wasn't at all graceful or an
effective communicator to educate and increase awareness. I was a wild mama
bear ready to attack. I was still grieving the loss of the ideas, hopes, and
dreams I had envisioned for Cecilia. I was still trying to figure out what
normal would look like for us. I was stressed out, overwhelmed, and
scared...scared of her dying or me not doing enough to give her the best chance
at success and independence. I was a first time mom and thought a good mom
meant knowing everything and doing it all myself. I am much better about
breathing and counting to 10 before responding, giving people the benefit of
the doubt, and seeing it as an opportunity to change the world for the better
through education. I still have my moments of sarcastic replies or comments
that slip out accidentally (ie: Did you REALLY just ask me that???).
1-3 words that describes life as a parent of a disabled child:
Terribly rewarding and stressful.
You are obviously helping Cecilia reach her highest potential. How do you feel Cecilia is changing the world?
Cecilia is inspiring people
to get moving and be active. No excuses. She has shown people that life may be
hard but be happy about your blessings. She has demonstrated to people that
despite a crappy body, there can be a heck of a lot more going on in her head
despite saying few words. She feels and hears just like anyone else. Finally,
she has reminded why or inspired people to choose careers in healthcare or
special education.
What is your favorite thing about being Cecilia's mother that you wouldn't change for the world?
C reminds me daily: 1) live
life to the fullest, 2) God has a plan but you may not understand it for a very
long time, 3) persevere and be determined, 4) listen more and talk less, 5) regardless
of what life deals you, there is ALWAYS something to smile about, and 6) when 5
is hard, a dance party will help.
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